Self-diagnosis, or self-identification, has become a significant and often debated topic within the autism community. For many individuals, seeking a formal autism diagnosis from a professional can be fraught with obstacles. These range from a lack of understanding among professionals about the diverse ways autism presents itself, to limited resources for evaluations, and even concerns about the implications of having an autism diagnosis formally documented. As a result, numerous people find themselves either unable to access a formal diagnosis or actively choosing not to pursue one. This leads to the crucial question: Is Self Diagnosis Of Autism Valid?
While some express reservations about self-diagnosis within the autistic community, research is increasingly suggesting that these concerns are often unfounded. Moreover, considering the potential for discrimination that can accompany a formal diagnosis and the considerable barriers to assessment, self-identification emerges as the only viable path for many seeking community, understanding, and support.
It’s important to preface this discussion by acknowledging my own position. I received an official autism diagnosis in 2021. Furthermore, in my clinical practice, I specialize in conducting autism evaluations, and I’ve authored a book aimed at equipping mental health professionals to better support their autistic clients. Drawing from both personal experience and professional expertise, I hold strong opinions on the validity of self-diagnosis, which I will share here.
Alt text: Professionals reviewing autism test results, highlighting potential complexities and inaccuracies.
A Note on Perspective
Before proceeding, it’s vital to remember that I am just one voice within the autistic community. It’s crucial to listen to and value the perspectives of a diverse range of autistic individuals, not just my own. If you are not autistic, please do not use my viewpoint to silence or invalidate autistic individuals who may disagree with me. I leverage my platform, credentials, and privilege to advocate for my community, but I am not a representative for all autistic people. The autistic community is not monolithic, and experiences and opinions vary widely.
With this important disclaimer in mind, let’s delve into the reasons why I firmly believe in the validity and importance of self-diagnosis and self-identification within the autism community.
Self-Diagnosis Is Widely Accepted Within the Autistic Community
While no single survey can encapsulate the entirety of a community’s views, survey data can offer valuable insights into prevailing opinions, particularly when seeking to understand community voices directly. In 2022, Chris Bonnello of Autistic Not Weird conducted a comprehensive survey focusing on autism, gathering responses from approximately 7,500 autistic individuals. Although I became aware of the survey after its completion, the data collected by Chris provides significant information about the perspectives within the autistic community.
One of the questions posed in the survey directly addressed the validity of self-identification, asking respondents whether they agreed with the statement: “A diagnosis should not necessarily be required for someone to identify as autistic.” Remarkably, approximately 64% of autistic respondents expressed agreement with this statement. This significant majority indicates a strong consensus within the autistic community that formal diagnosis should not be a prerequisite for self-identification as autistic. This acceptance underscores the community’s understanding of the barriers and challenges many face in obtaining a formal diagnosis, further supporting the idea that self diagnosis of autism is valid within the lived experience of autistic individuals.
Formidable Barriers Exist to Obtaining an “Official” Autism Evaluation
The Autistic Not Weird survey also shed light on the significant obstacles individuals face when attempting to secure an “official” autism diagnosis. According to the survey results, half of the autistic respondents and half of the caregivers who participated reported that the pathway to receiving a formal diagnosis was inaccessible. This widespread inaccessibility stems from a multitude of factors, including:
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High Costs: In the United States, the financial burden of autism evaluations is substantial. On average, evaluations for children range from $1,500 to $3,000, and assessments for adults typically incur even higher costs. These expenses can be prohibitive for many individuals and families, effectively blocking access to formal diagnosis based on financial limitations alone.
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Insurance Coverage Limitations: Despite the significant need for autism evaluations, many insurance plans routinely deny coverage, often deeming these assessments “not medically necessary.” This denial of coverage forces individuals to bear the full financial weight of evaluations. Furthermore, the administrative complexities and challenges of billing insurance have led to a growing number of evaluators being unable to sustainably accept insurance, further restricting accessible options.
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Limited Availability and Extensive Wait Times: Access to qualified professionals who conduct autism evaluations is severely limited, leading to lengthy waiting periods. A 2023 report from Cognoa, a company focused on child development and behavioral health, revealed that US families seeking an autism evaluation for their child face an average wait time of three years before receiving a diagnosis. Wait times for adults can stretch even longer, often taking months or even years. Compounding this issue, very few autism evaluators offer assessments specifically for adults, leaving a significant portion of the autistic population without accessible diagnostic pathways.
Alt text: Long winding road, symbolizing the arduous journey to autism diagnosis.
Autism is recognized as a neurodevelopmental condition, meaning autistic individuals are autistic from early childhood throughout their lives. Therefore, individuals who are unable to navigate the complex and often inaccessible system to obtain a formal diagnosis are still autistic and equally deserving of understanding, support, and community. The barriers to formal diagnosis highlight the practical necessity and validity of self-diagnosis for many.
Diagnostic Inaccuracies and the Fallibility of Evaluators
My personal journey toward autism diagnosis underscores a critical point: evaluators, despite their professional training, can be fallible and make mistakes. My initial suspicion that I might be autistic arose in 2020 as I became more involved in online autistic communities. Interactions with community members highlighted that my experiences and traits resonated strongly with autistic individuals I was supporting in my clinical work, more so than I had previously realized. Driven by a need for clarity and grappling with internalized misconceptions about autism, I decided to seek a professional evaluation.
After enduring a wait of over six months for an appointment and allocating funds to cover the evaluation costs, I underwent a series of assessments. The results indicated a “high probability” of autistic traits being present. However, the evaluators concluded that I was not autistic. Their rationale was based on my perceived ability to communicate effectively with them during the testing process. They also made generalizations, stating that autistic individuals are rarely married or employed full-time, and therefore my marriage and career were considered exclusionary factors—despite being aware of these aspects of my life prior to administering the costly tests.
The reasoning provided for dismissing the assessment results and denying a diagnosis felt flawed and incongruent with my lived experience. Consequently, I sought a second opinion, again incurring significant financial expense. This second evaluator meticulously reviewed the initial testing data, conducted further assessments, and ultimately concluded that I was, in fact, autistic. Given that autism is a lifelong neurodevelopmental condition, this meant I was autistic even when the first set of qualified professionals determined I was not.
My experience of misdiagnosis is not unique. Research consistently reveals significant disparities in autism diagnosis, with underdiagnosis being particularly prevalent in Black and Latinx communities, as well as among individuals who are not cisgender males. These diagnostic disparities underscore the limitations and biases that can exist within the formal diagnostic process.
This personal experience and broader research highlight that even when individuals overcome the substantial barriers to accessing formal evaluation, an accurate diagnosis is not guaranteed. Not everyone has the financial resources to pursue multiple assessments to rectify potential errors. It raises a crucial question: why should individuals be excluded from the autistic community or denied self-understanding because of potential misunderstandings or biases within professional evaluations? This further strengthens the argument that self diagnosis of autism is valid, especially when formal routes are unreliable.
Who Can Diagnose Autism in Adults?
Risks Associated with Having a Formal Autism Diagnosis in Medical Records
For many self-diagnosed autistic individuals, the decision to not pursue a formal diagnosis is a deliberate one, driven by legitimate concerns about potential risks and discrimination. Numerous autistic individuals report experiencing disrespect and a denial of autonomy simply because of their autistic identity. The potential negative consequences of having an autism diagnosis documented in medical records are varied and concerning, including but not limited to:
- Autism Registries: In some regions, having a formal diagnosis can lead to inclusion in government registries that list autistic residents. This raises significant privacy concerns and potential for misuse of such information.
- Immigration Restrictions: Certain countries have immigration policies that deny visas to autistic individuals, making a formal diagnosis a barrier to international mobility and opportunities.
- Loss of Autonomy through Conservatorship: Autistic individuals, even adults, are sometimes placed under financial and medical conservatorships, stripping them of their legal autonomy and decision-making rights. This disproportionately affects disabled individuals, including those with autism.
- Medical Discrimination: Disturbingly, autistic individuals have reported instances of medical discrimination, such as being subjected to Do Not Resuscitate (DNR) orders without informed consent or being denied organ transplants solely based on their autism diagnosis.
Alt text: Medical chart stamped “confidential”, highlighting privacy risks of autism diagnosis.
Individuals who suspect they are autistic but are wary of these potential risks associated with a formal diagnosis still deserve access to community support and self-understanding. The validity of self diagnosis of autism is further underscored by the need to protect individuals from potential discrimination and systemic biases.
High Accuracy Rate of Self-Diagnosis in the Autistic Community
While formal evaluations and diagnoses are essential for accessing specific support services and accommodations tailored to individual needs, it’s also crucial to acknowledge the increasing body of research supporting the accuracy of self-diagnosis within the autistic community. It is true that self-identification can sometimes be inaccurate, particularly given the overlapping symptoms between autism and other conditions. However, the potential for diagnostic errors exists in formal evaluations as well, as previously discussed.
Emerging research indicates a notable trend: self-diagnosis of autism within the autistic community demonstrates a high degree of accuracy. Specifically, the Ritvo Autism Asperger Diagnostic Scale-Revised (RAADS–R), a self-report questionnaire designed to assess autistic traits, consistently yields elevated scores among self-identified autistic individuals. A recent study has shown that the RAADS–R exhibits an impressively high predictive rate for identifying individuals who would meet formal diagnostic criteria for autism when subjected to more comprehensive assessments. This research provides empirical support for the validity of self-diagnosis, suggesting that for many, self-identification is a reliable indicator of autistic identity.
Furthermore, considering that access to “official” support services and accommodations typically requires a formal diagnosis, self-diagnosed individuals are not in a position to unduly consume resources intended for those with formal diagnoses. This reality mitigates concerns about potential misuse of resources and further validates self-diagnosis as a legitimate pathway to self-understanding and community connection.
What This Means For You
Ultimately, you are your own best advocate. If you resonate with the experiences and traits associated with autism and suspect you might be autistic, resources are available to support your journey of self-discovery. Embrace Autism offers free self-assessments and a wealth of educational materials that can be invaluable in understanding yourself and navigating the complexities of self-identification and autism. Exploring these resources can be a positive step in answering the question, “is self diagnosis of autism valid for you?” and in finding community and self-acceptance.
